“Sophia’s Superheroes” was founded June 11, 2017 with the premise of the Foundation to follow true Superhero fashion and come in to save the day when a child and family are in need.
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We have called Sophia Toni, age 6, our Superhero for years as she continues to defy the odds of developmental goals that some doctors and therapists said she may never meet. She works so hard every second of the day just to have basic skills that most people don’t even realize are a skill - like drinking from a cup or putting on your own shirt. With an extremely rare genetic diagnosis - a mutation of her IQSEC2 Gene - she is only 1 of less than 100 worldwide. And literally 1 of 1 with her exact mutation marker.

She truly is one of a kind - and our Superhero.
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Meeting inchstones and milestones does not come without extreme hard work from Sophia,

our family, teachers, aides, therapists and other support systems.

And has also not come with easy access to equipment, devices or therapies over the years
that could have helped her development and independence along the way.
Unfortunately, such needed items and services are sometimes the biggest battles with insurance companies.
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At age 2, Sophia was still unable to stand on her own. We were told that she would probably never walk.

After countless letters of medical necessity and long winded arguments with insurance, she was finally granted approval for a gait trainer. It took 8 months to come in. We had an appointment with the Clinic on October 4, 2016 to pick up her gait trainer. On October 1 - at age 3 years, 2 months old - much to our surprise, Sophia took her first independent steps.

Upon arrival at the Clinic with Sophia taking steps, we were told we didn’t have to take it. 

We definitely took it.
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We offered the brand new gait trainer to friends with a son that also was not walking.

He never even got to use it - he also started walking! 

It then went to a family with another boy that was not walking.
After utilizing it for a few weeks he also started walking! This thing was great!
The same gait trainer is now in the hands of a wonderful little girl

that is working hard every day to meet that milestone!
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After years of insurance wars over services, equipment and testing with our own daughter

and in talking with other special needs parents about their battles,

we realized how common this was.  And how it was not okay.
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After registering the name of the Foundation, we pushed it to the back burner to make time for more research and preparation. In April 2017, I (Nicole) had a dream that I was sitting on our front step with Sophia clapping hands (Sophia’s favorite thing) with two small boys running around the front yard. All of sudden, Sophia looked up and started singing ‘Blackbird’ (The Beatles). I was stunned and said to her, “Oh my gosh, Sophia are you singing?” One of the the little boys ran over. Angel wings popped out of his back and he wrapped them around Sophia and said, “Doesn’t she have the most beautiful voice, we hear it all the time!” At that point, in my dream, I realized was dreaming and thought to myself that if Sophia could talk this is what her voice sounded like and the dream was someone’s way of letting me hear it. She kept singing and singing and clapping her hands. I finally woke up and desperately tried to go back to sleep to hear it more.

After telling a friend about the dream, she said how much the lyrics of the song

went perfectly with what they were trying to do with the Foundation -
“Take these broken wings and learn to fly” - “You were only waiting for this moment to be free”
... and so on... She was so right!
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After doing some research into the song, it was found that the song was written on June 11, 1968 and released later that year on November 22, 1968. Ironically, not only was the original Foundation

registered on June 11, but Sophia’s mutation is at 11.22 on her X chromosome.
I definitely know that for sure that was her beautiful voice now.
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On June 11, 2018 - one year from registration and on the 50 year anniversary of ‘Blackbird’ -
we changed the legal name to ‘The Blackbird Foundation’.
And today - on Sophia’s gene marker day - we share this with you.
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We are going to take on a year of fundraising before starting to take applications for equipment,
but have already had tremendous support from family, friend

 and other organizations and institutions that knew this was in the works.
We are looking forward to being able to help these kids with a way to fly <3
 
Nicole & Steve - 11.22.19